Migraines

[Kira]

Along with everything else, I've been getting a lot of migraines lately. I have had them off and on since childhood, but they have been particularly bad the last several months and have been getting worse & more frequent.

I know they are migraines & not some other kind of headache because they are classic migraines--light & sound sensitivity, vision changes, flashing lights, nausea, etc--sometimes even with numbness/tingling that goes away after the headache stops. I have talked to my mito doc (metabolic/genetics) and pain doc about them and both agree that they are migraines.

The one thing that might make them different from typical migraines is that everyone seems to think the mito is directly causing them... the short explanation of how mito causes a migraine & other neuro symptoms is that glucose metabolism in part of your brain isn't meeting the cells' needs (because of the mito), so that part of your brain starts acting all weird.

I am getting these pretty often lately, and sometimes they last a long time. Sometimes I won't get one for a couple of weeks, but sometimes I will get 2-3 per week. The past week or so I have had a headache everyday that has been fluctuating in intensity... I just can't get it to go away. Sometimes they last a few hours and sometimes they last a few days. Not all of them are super bad, but some of them make me crazy.

Anyway... my question is about people's ideas for things to try. We are kind of at a loss right now. The only thing that really works is sleep & just plain waiting for them to stop on their own.

The OTC stuff (ibuprofen, excedrin, tylenol, naproxen) doesn't do anything. Taking my breakthrough med (oxycodone) actually consistently makes my headaches worse. I can't tolerate Topamax (makes my metabolic acidosis even worse) or Depakote (seriously contraindicated in mito due to effects on metabolism, and it made me really sick when I briefly took it before my mito dx). I am already on an antidepressant (Effexor) for mood, and am already on a beta-blocker (Atenolol) for autonomic dysfunction. My mito doc doesn't want me to take any of the migraine meds that cause vasoconstriction, like the triptans (imitrex & its cousins), because of something related to the mechanism of mito migraines & an increased risk of stroke in us mito folks.

What we have been doing is I take Phenergan (which I have for nausea anyway) and then one of the OTC meds, usually ibuprofen. I curl up on the couch and make everything quiet and dark and I wait. I also do the usual stuff I am supposed to do for my mito when symptoms are acting up, like get some sugar in me & keep up with fluids & stay on top of nausea & take my carnitine/CoQ10/etc. I only really call the doctor if I can't control the nausea & need IV fluids/glucose (I also called about the neuro symptoms the first few times, because it freaked me out).

I have talked about it with my pain doc at literally every appointment for the past several months, and we're getting nowhere. My mito doc did offer to give me a neurology referral if my pain doc can't help, but I'm not sure what neuro would do that my pain doc can't do. I am wondering if there are other classes of meds to try. We were talking about switching to a different beta-blocker or a different antidepressant, which might help with prophylaxis. I still wish there was something more helpful that I could have on-hand to stop the really bad headaches, though.

I hate this disease. If it would cause one or two major medical issues, fine, I could deal with that. It would suck, but I could deal with it. Instead, though, it basically makes every cell in your body not work... if you let them do enough tests, you end up with a diagnosis of every possible disease, since everything is broken. And then, of course, the treatment for one broken part of you is contraindicated because of another broken part of you, so no one can really fix anything without breaking you more. Mito sucks.

[Mark N]

Kira, I don't have any answers about your migraines but I do what to offer you a shoulder if you need one to lean on. I have followed your post for a couple of years and I understand how awful it is for someone your age and how awful your disease is. The worst part is that there is no answer to what you are going through. I know that each symptom can be treated to relieve some of the pain but no comprehensive way to treat or cure your disease. I know how bad my spinal condition is and can imagine with all the other issues you are dealing with. I hope you find an answer for your migraines and that they go away soon.

[Maggie]

I can relate to your frustration. I experienced migraines 20 years. I went to several large specialty hospitals and tried every medication there was out there. When I reached 50 years old, I developed high blood pressure and had to add a calcium channel blocker and diazide to my beta blocker I was already taking. For some reason that combination worked on my migraines. I slowly quit having them over a period of a few months.

That is the only difference I can see in my medical routine during that time. I am so thankful for a life without them now. Maybe your day is coming soon. Not that I want you to have high blood pressure, but something along the way will just click for you.

Maggie

[Kira]

Mark & Maggie, thanks for the responses and support. I am hoping that things will quiet down one of these days. I know I can't get rid of the mito, but things can stabilize/plateau for a while, and I am wayyyy overdue for that to happen... :)

I have not tried calcium channel blockers and will have to look into that more to see if there would be a way we could do that. I am not sure if I could do it, though, because I am on a beta-blocker (atenolol) for heart rate control from my autonomic dysfunction and my BP will be too low if we add anything else that lowers BP further. Same for the Dyazide.

I don't know about some of the other AEDs. I can't take Topamax or Diamox b/c of my metabolic acidosis (both make it worse) and I can't take Depakote b/c mito issues (contraindicated in mito). I don't know about mito contraindications for other AEDs. I am on a tiny dose of Effexor XR right now for mood, but maybe we can do something with dosage or with a different antidepressant as a migraine prophylactic. We also talked about maybe switching my atenolol for a different beta-blocker (propanolol?)... I was also wondering about Toradol for the acute pain.

I did see that CoQ10 is helpful with complex migraines, especially in children... CoQ10 works by improving mitochondrial metabolism. I already take a high dose of CoQ10 every day, for the mito, but it was interesting to see that it is being used for complex migraines.

Anyway, I'm rambling, but thanks again for the support.

[Naominjw]

Yeah. My child had complex migraines. Evidence since infancy... diagnosed at age two. They increased to the point they took over her life. That's when they put her on Topamax which only partially controlled them--but that was better than nothing. Topamax caused cognitive impairment but it was better than no life at all. Then came the research about CoQ10 helping over half the pediatric migraineurs so she was tried on that. Wow. She is now off Topamax. Has NO migraines. It has been 1.5 years since she had a migraine... after 19 years of them.

[Karenica]

Hi Kira, if you don't mind my input on migraines, you said that you mention you curl up on the couch to make it quiet, try laying in a dark room where it's quiet with a cold compress on your forehead or over your eyes and see if that helps, I understand that you can't take anything for your migraines but see if laying quiet in a darkened room helps.
Karenica

[Kira]

Thanks for the replies & support.

Naominjw, I am glad that the CoQ10 helped so much with your daughter's migraines. That is awesome... Gives me more motivation to be good about taking all of my mito supplements, every day... I am usually pretty good about it, but it is a LOT of pills (12 carnitine, 8 CoQ10, 2 B-complex, 15g creatine in 8oz juice, etc).

Karenica, I agree that laying down in a dark, quiet place is best when you have a migraine... Right now, getting as comfortable as possible while I wait for them to stop is about all that I can do.

One good thing is that I had PT today. For part of the time, my PT usually works on loosening up some of the scarred/tight muscle tissue in my upper arms, back, shoulders, etc from previous rhabdomyolysis attacks. It is like my "free" massage... it's great. Today I told him I'd been having headaches, and so he spent some time working on the tight muscles in my neck and at the base of my skull, too. I know it doesn't have much to do with migraines, but it does help with some of the overall discomfort, and it felt good :)

[GardeniaGirl]

I didn't see Midrin in your list of meds that you couldn't take.

I can't take Imitrex or the other meds like it, but Midrin + promethazine is my wonder drug combo for migraines. (I get anywhere from 2-6 per month on average).

I've been using this combo for the past few years and while I do occasionally get one that is too strong for these, if I take the pills at the very first twinge of a migraine, they usually work great.

Good luck!!

[Kira]

I will ask about Midrin. I think that one of the ingredients in Midrin works via vasoconstriction, though... will have to see what my mito doc thinks. I think his objection to vasoconstrictors for mito migraines is all theoretical, anyway.

I do take promethazine (Phenergan) already. At this point, I am doing an NSAID w/ promethazine (usually ibuprofen).

Time to try to go to bed...

[Mark N]

Kira, I am glad you can get massages with the PT and that it helps relax all the tight muscles. It might not stop the migraines but like you say it helps out with the other issues from tight neck muscles.

Naomi, it is great to hear your daughter has now not having migraines any more and I hope it continues for her. It must be a big burden lifted off her shoulders.

[jtroy]

Kira,

First I'm sorry you are now having to deal with this on top of everything else. I'm actually writing because I am deeply concerned about the head pain...deeply...because you describe a progression exactly as I had and I wouldn't wish what I have on my worst enemy. And...I am convinced had I been more proactive to become a patient instead of seeing them I would have been able to glean significant clues or maybe even change it all. I'm not saying that you are going to end up in this same similar boat...but I do hope your head pain issue can be drilled down on more.

Drop me an email at: tjandfon@hotmail.com I may be out later this evening so if you write then I'll answer later tonight. I have some ideas about meds a so on you could tolerate with your other meds and the Mito but hopefully maybe can give you some answers. I'll look for it....no hurry just write when you can....wishin you all the best.

Regards,

T. Jones, DVM

[mrsdoubtfyre]

Here are some links that explain this:

http://www.neurology.org/cgi/content/full/66/12/E43

http://www.headaches.org/education/Headache_Topic_Sheets/Transformed_Migraine

http://www.ama-assn.org/amednews/2008/12/15/hlsd1215.htm

It is a complex problem without an easy solution.

[Tbackpain1]

Kira,

Have you made any headway about getting the option to deliver IV fluids in a home setting? I know that in your case, often a boost of D10 makes all the difference in how you're feeling from day to day. One would think that a simple solution like IV fluids would be preferable for patient and physican over using "creative chemistry" with your medication and vitamin regimine.

I hope you're feeling a bit better. I would probably take your mito doc up on the neuro referral and look into trying to find a primary that will better meet your needs than the one you have currently.

Be Well.

Theresa

[Kira]

Troy, I'll send you a PM in a little bit... :)

-----

Mrs. D, Thanks for the input. I don't think it's med overuse headaches, though, for a few reasons.

First, it's not that I AM taking all of the meds listed in my other posts... it's that I CAN'T take the meds listed, or that they don't work. The problem is that nothing really works. The meds I do take are things that I take on a daily basis for various other issues (levocarnitine, coQ10, atenolol, effexor, baclofen, fentanyl patch). I have a bunch of prn meds, but don't take any of them often enough for it to really fit with this. I don't take the NSAIDs very often, either... just with some of these headaches, after the headache starts (usually together with phenergan).

Second, the symptoms are just too classic for complex migraine. I get an aura (usually visual stuff... flashing lights, blurriness, trouble focusing on moving/bright stuff on TV, etc). Then I get a headache, always on the left side of my head/face, with phonophobia, photophobia, nausea/vomiting, and this weird combination of hypersensitivity and numbness/tingling on my face, mouth, hand, and/or arm. As the headache resolves, the neuro stuff eventually goes away, too... though sometimes the neuro stuff lasts a bit longer than the headache.

The third reason I think MOH is not too likely is that migraines, especially with focal neuro symptoms, are really common with mito. So I have a good explanation for it. Plus, I first starting getting these in childhood, before I was on any meds... it is just that they have increased in frequency and intensity over the past several months.

-----------------

Theresa,

I haven't really gotten anywhere with doing the D10 at home, but that is as much my fault as anyone's. I did get a new PCP last spring, and actually have a new mito doc, too (my old mito doc retired in October). I haven't even brought up home D10 with either of the new guys, though... mostly because I haven't needed it as often lately. For whatever reason, I've been able to control my vomiting better at home lately. It still happens, but I am better at getting control of it before it causes a full-blown exacerbation. And, we did set things up so I can get a liter or two of D10 as an outpatient at the infusion center, as long as we call early enough in the day for my PCP to fax orders over there. Also, with my last exacerbation in September, my PCP was able to directly admit me to the hospital & bypass the ER, which was nice.

I do know that I'll end up needing some kind of venous access device in future, though, because I had tons of trouble with IVs again during my Sept hospital stay. I think I set a new record that time... blew through 3 IVs in the first 12 hrs and blew through a total of 6 IVs in the first 36 hours before they finally got came to do my PICC. They had a really hard time starting any of those 6 IVs, too... kept calling the IV team, and the IV team nurses kept having to call other IV team nurses... it was hell. Now, supposedly, I am supposed to get a PICC ordered upon admission, but the problem is still that there is a long wait to actually get a PICC once it is ordered in that hospital.

For what it's worth, if these headaches really ARE mito migraines, then I totally agree that the D10 should help. One of the first things my old mito doc said when I told him about the migraines was "get some sugar in you right away when that happens." The mito guys take these headaches really seriously--especially when there are accompanying neuro symptoms--because they are supposedly caused by the same mechanism as mito "Stroke-Like Episodes" (SLEs... the "S" in MELAS).

Mito SLEs are basically caused by a chunk of brain tissue not metabolizing glucose right. When that happens, the cells aren't getting enough fuel because they can't make enough ATP, and toxic metabolic byproducts are also building up locally. It can cause effects really similar to ischemic stroke, because at the cell level there is the same basic problem: not enough ATP being made. If it is bad enough, there can be tissue death and all of that, just like in a stroke... but there doesn't have to be.

My mito doc said that they think mito migraines also happen from brain cells' metabolism being messed-up & not making enough ATP. It makes sense that getting a big glucose load in at the BEGINNING of the attack should help. Give the cells extra fuel in the beginning, before the toxic metabolic byproducts can accumulate and the cells start dying and tissues are inflamed and everything. At that point, the glucose would still help fix the underlying problem, but it wouldn't be enough to fix the pain & inflammation. I know that forcing myself to eat something early really makes a difference in keeping me away from the ER/hospital for vomiting and the potential resulting exacerbation... so maybe I just have to be extra conscientious about getting glucose in early with these headaches, too.

Well, I've been REALLY rambling, so I'm going to go for now... Thanks again, guys, for the ideas and support...

[Kandra]

Second, the symptoms are just too classic for complex migraine. I get an aura (usually visual stuff... flashing lights, blurriness, trouble focusing on moving/bright stuff on TV, etc). Then I get a headache, always on the left side of my head/face, with phonophobia, photophobia, nausea/vomiting, and this weird combination of hypersensitivity and numbness/tingling on my face, mouth, hand, and/or arm. As the headache resolves, the neuro stuff eventually goes away, too... though sometimes the neuro stuff lasts a bit longer than the headache.

Kira,

I was reading your symptoms above and couldn't help thinking that it sounds very much like what I experience during a simple and a complex simple seizure. So, off I went to look up the relationship between mito and epileptic issues and indeed there is some as I'm sure you know. Below is a link to a short paragraph on MELAS which can include partial seizures:

http://tinyurl.com/9xqllr

As always...good luck and take care! Please keep us posted :)

[Kira]

Thanks for the info, Kandra. It seems like mito can cause just about anything, doesn't it?

[Boxerlover]

Kira, I can relate a little as I am experiencing the same, well almost. I have never had a migraine before but my husband does get classical migraines every blue moon. So I know what they are from his perspective but I had never had one.

A few years ago I began to get these headaches, not often, but they got more frequent and then began lasting longer. Usually if I lied down and was still they would go away. Because I didn't get them often I looked at outside sources, did the barometric pressure drop, was it a sinus headache, etc. Nothing helped but time. They varied in intensity from excruciating(although not often) to just annoying. Until recently the last time I had them was over a year ago and I had it for 3 months every day! It drove me crazy.

Well I hadn't had them until about a month ago and I started to get them again. The last one was bad, felt like someone put a knife in my eye which is typical migraine.

I have sarcoidosis, an auto-immune disease where granulomas (or little tumors) can grow anywhere and cause havoc. Well it turns out that the little buggers love the sinuses. So they then press on nerves and bingo, I also have swollen lymph nodes in my jaw which doesn't help. I tried the cold compress, but that made it worse so I just recently tried heat, a gel pack that I microwaved and that actually helped.

But I know how bad they are. I hate them! I read something recently on toradol helping with TMJ so I thought I'd try that next time I get one as I have that already for kidney stones. I'll talk to my rheumy at my next appointment and see what he says.

I hope you can find something that can help!

Melissa

[Kira]

Thanks, Melissa... I am sorry you are having such bad head pain. I hope you are able to get some relief, too! Hopefully the Toradol will help...

[shelley2]

Just wanted to say i am sorry you are in so much pain. my mum has suffered from migraines for may yeras and alot of it was caused by the meds she was on unfortunately. She finds that neck excercises and massage helps to relieve some of the pain. Hope you feel better soon.

[Kira]

Thanks again for all of the responses & support.

My migraines DO hurt, and I would like to get control of them as soon as I can... but they aren't as bad as my other mito body/muscle pain. My other pain is worse than my migraine pain (NOT saying that my other mito pain is worse than EVERYONE's migraine pain.... just that MY muscle pain is worse than MY migraine pain).

People just don't realize how bad mito muscle pain can be.... people hear "muscle pain" and assume that it is the same as the types of muscle pain they have experienced in their own lives... ie after exercising too hard, body aches with the flu, pulled muscles and "strains," etc. There is this idea that it is not serious if it "only" affects the muscle/soft tissue. But my mito muscle pain is a whole different beast.

On the other hand, most people understand that migraines hurt a lot... people have either had migraines themselves, or they know someone who gets them... so they know, by experience, that migraines really hurt, much more than the milder kinds of headaches people might compare them to. But how many people have experienced pain from mito (or even know someone with pain from mito)? I think this all makes it easier for people to understand a migraine than mito pain.

Luckily, my docs take my mito pain seriously. This hasn't always been the case during hospitalizations or in the ER, but at least my outpatient docs take it seriously. But the non-medical people in my life have really varied reactions to my pain... some have seen how bad it gets, so they are more supportive now... but overall they seem to just not understand it and there is this "but it's just muscle pain... how bad can it be?" mentality. Even those people, though, seem to understand when I say I have a migraine and to let me go rest.

I feel like I am kind of whining about the migraines, though. I just feel that... compared to my mito muscle pain (and especially my rhabdomyolysis pain)... I really shouldn't be complaining about my migraines. I guess the reason I'm complaining about the migraines is because they are sort of new... I've been getting them for years (since childhood), but never got them with this kind of frequency or intensity. Plus, there are "new" neuro symptoms with them ("new" meaning relatively recently). Plus, even if they don't hurt as much as my other pain... they still hurt like hell and I still want them to go away!

[Kathi49]

Kira,

I am sorry to hear of your migraines. I probably won't be of much help because as you know I had the c-spine kind with variant migraines. I did want to mention Imitrex or Maxalt. Can you take either one of those? I am just throwing them out there because they were both something my Neurologist wanted me to try. I never did because by that time I was heading towards surgery anyway. And I am not sure...maybe there is something newer that I just don't know about. I hope you can find and get some relief.

[cindybear]

I do not get migrains,,but horrible head pain, related by an inoperable pulsating aneurysm hitting on my cranial nerves..I forget which cranial nerves is affected, I know that my trig nerve is and my nerve behind my left eye is alot larger..I have had this for 8 years,,So have done alot of drugs..ALOT...100's..But the only thing that has even touched the stabbing , searing, electric like, not going away pain was topamax..but the other pain,that is allways there 24/7...the only thing that touches it is (so far ) is methadone..I know my pain is different,, but wanted to put my 2 cents in , To let people know, that there is different kinds of head pain . Hugs, I hope you find something that helps your pain,,Hugs, Cindy

[Kira]

Kathi & Cindy,

Thanks for the replies... I know you both have/had some terrible head pain and it sounds awful. It is caused by different things than mine is, but it is still head pain even if it has a different cause...

Thanks for the ideas... I can't take Imitrex or Maxalt b/c they are both triptans, which are vasoconstrictors (see my posts above about why my mito doc doesn't want me to use vasoconstrictors with these... it's a long explanation and don't want to keep having massive posts LOL). I can't take Topamax because it makes my metabolic acidosis a lot worse. It can cause mild metabolic acidosis in anyone, but since I already have metabolic acidosis from the mito, it gets really bad when you add the acidosis from Topamax. (I get two kinds of metabolic acidosis... one directly from the mito, with attacks... and one because of the mito's effects on a specific part of my kidney, the proximal renal tubule. Interestingly, the acidosis caused by Topamax is also caused by effects on the proximal renal tubule.) I don't know about Methadone... right now I am on Fentanyl patches (which work pretty well for my other pain), with oxycodone for breakthrough. The oxycodone actually seems to make my headaches worse, for whatever reason. See why I am frustrated? (LOL)

I am actually wondering if SOME of my head pain is coming from my neck. My PT is amazed by how tight and hard some of the muscles back there are. There is a ton of hard, scarred muscle tissue in my upper back, neck, shoulders/upper arms, and chest from repeated rhabdomyolysis attacks. Even though there is so much hardness & scarring, the muscles are actually really weak, which messes up movements & posture & stuff. Some muscles are always kind of stretched more than they should be... others are all spasmed... and everything is sore & inflamed. But we are working on loosening up the scarred stuff & getting better range-of-motion, strengthening the weak areas, doing stuff with posture & positioning (w/ supports when needed), and decreasing inflammation/pain. One cool thing is that I get "massages" from my PT for free every week because he is working on loosening up all of that scarred/hard stuff.

So, I do wonder if some of my head pain is from my messed-up neck muscles. I keep getting hand/forearm numbness with the headaches. Some of the head pain does seem to have an occipital pattern... the whole "ram horn" thing. And I have had a few episodes where that feel like a pinched nerve in my neck that last a couple of days (with focal pain in my neck, hurts to bend neck or move head to that side, radiates into my arm)... but those have always gone away on their own, and weren't anywhere near as intense as my other pain, so I have just kind of blown them off.

So I have been wondering, anyway, if my messed-up neck muscles are possibly a component of at least some of this head pain. Although other times the headaches are very clearly migraines, with the aura & visual stuff & nausea/vomiting & light/sound sensitivity & numbness/tingling/hyperesthesia. Maybe I am getting 2 different kinds of headaches... migraines from the mito AND headaches from messed-up neck muscles. If they were from the neck muscles, at least that part should get better with some of the stuff we're doing in PT.

[Mark N]

Kira, it would be great if some of your headache pain is from the neck muscles since you think the PT you are doing will help. It would be nice to get some relif from PT and not have to use any more meds. Good luck with the PT and I hope you do find some relief from it.

[razmataz]

Hi Kira...

Regarding your neck pain...I went to PT for myofascial pain and trigger points.
I know my migraines come from my neck...they are unbearable...I've had migraines since age 8...now they are transformed due to radiculopathy and I also have Fibromyalgia.

I have been fighting my doc for TWO years about not taking Lyrica...Finally I started taking one 25.mg.Lyrica per day...minimal but noticeable help...Then I was desperate...and agreed to titrate up to 2 -25 mg. Lyrica per day...I was scared to death to try(because I had a bad rx to Neurontin) but I bit the bullet and tried...and not only does my neck feel much better...but my headaches are now controllable with Lyrica and Fioricet....it was getting to the point that the Fioricet would not work but it does now...

Hope this helps.

Razmataz